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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Not to have routine smears anymore?

114 replies

SmearFear191 · 29/12/2023 15:06

I'm 29 and had my first smear age 25 which was clear. It all went downhill from my second one.

I got a telephone call inviting me for a colposcopy before I'd even received my smear results. The colposcopy nurse on the phone explained I had HPV and high grade severe dyskaryosis, the worst grade, and had been referred urgently under the 2 week wait. I asked whether this meant I had cancer and she said she just couldn't say.

You can imagine the panic I had over the next 2 weeks waiting to be seen and then the biopsy itself was quite traumatic.

Long story short, it wasn't high grade severe it was mild and no treatment was necessary. They had me back in 6 months and confirmed the cells had resolved on their own.

I'm then invited back again for another check, I assume to see if the HPV had cleared, and the colposcopy was clear again with no abnormality seen at all.

They took a smear whilst I was there and I got the results for that today, dyskaryosis again but no mention of HPV.

There was no dyskaryosis observed at all during the colposcopy so the smear is inaccurate again.

I can't fault the care of the NHS, they've looked after me very well, it's the smear test inaccuracies that have caused alot of unnecessary worry. I'm told it's not unusual for the results to be wrong either.

Given how unreliable the tests have been up until now do you think IABU to opt out and stop getting them? I'm thinking I could instead pay privately for a colposcopy every couple/few years and avoid all of the angst the smears bring.

OP posts:
Zanatdy · 30/12/2023 08:38

Babyblackbear78 · 29/12/2023 15:14

Don’t be silly, go for the smears. 1 friend has just recovered from cervical cancer at the age of 31 and another from vaginal cancer which apparently is unusual in a 40 year old.

I know 2 people from my secondary school year who died of cervical cancer, one age 27, no children and one age 31, leaving a 2yr old child. Always makes me sad thinking that if we had HPV vaccine back in our day they could still be here. When I see people skipping smears I think of these two lovely ladies whose life’s were cut short

tokesqueen · 30/12/2023 08:50

SmearFear191 you're not eligible for the HPV vaccine on the NHS once over the age of 25.

SD1978 · 30/12/2023 08:51

I no longer attend, as I've been told that with being HPV clear I don't have to. If I had HOV, I would continue to

HappyHolidai · 30/12/2023 08:54

I'm not going for any more smears since the last one I had when they didn't explain that they no longer look at the samples. I felt very strongly that I had not been given the opportunity to give informed consent to this invasive procedure which was pretty painful (I've had a number, varying from painless to agony-gave-up-with-no-sample-taken).

It's now possible to do a home HPV test which is so much less unpleasant than a smear. Unfortunately they don't yet do these on the NHS (they are being trialled), so I can't get my (clear) result added to my medical record. I bought it from Superdrug online.

However in the OP's position with her history I would go for a smear if the sample would actually be examined.

tokesqueen · 30/12/2023 08:58

SD1978 · 30/12/2023 08:51

I no longer attend, as I've been told that with being HPV clear I don't have to. If I had HOV, I would continue to

HPV lies dormant and can flare up. You can be clear one smear and positive the next. And vice versa. Extremely common. A negative smear doesn't mean you're not carrying the virus.

tokesqueen · 30/12/2023 08:59

HappyHolidai · 30/12/2023 08:54

I'm not going for any more smears since the last one I had when they didn't explain that they no longer look at the samples. I felt very strongly that I had not been given the opportunity to give informed consent to this invasive procedure which was pretty painful (I've had a number, varying from painless to agony-gave-up-with-no-sample-taken).

It's now possible to do a home HPV test which is so much less unpleasant than a smear. Unfortunately they don't yet do these on the NHS (they are being trialled), so I can't get my (clear) result added to my medical record. I bought it from Superdrug online.

However in the OP's position with her history I would go for a smear if the sample would actually be examined.

Bear in mind no one is visually checking your cervix. We refer many women with asymptomatic polyps that can become cancerous.

HappyHolidai · 30/12/2023 09:03

@tokesqueen - but they don't check. They can hardly see my cervix, then immediately put the brush in to twiddle.
Anyway the screening is about HPV/cancer not polyps.

Ceit · 30/12/2023 09:05

I am so glad to hear you can still get the vaccine. Like you, I had a couple of false alarms over the years, but the third time it was cancer. Because they'd caught it so early, a day operation was enough to excise it all. I believe improvements to the screening process are on the way, but in the meantime it's so worth the brief unpleasanand stress to carry on with regular smears. Good luck.

starynightskys · 30/12/2023 09:05

I had a smear a few weeks ago and it came back with HPV and ive been single for years.
No other probs just HPV i was scared still is.
I have to go back in a year for another one and ill be there on the dot.
Please dont stop going it saves lifes.

i dont like having them in fact i hate them but i still go coz you never know.
Jade goody comes to mind with everyone.

Seadreamers · 30/12/2023 09:12

Please keep having the smears as you are high risk.

My cousin was diagnosed with cervical cancer at 31 years old and had to have a hysterectomy with chemo etc. She was fortunate to have completed her family but at that young age others are not so fortunate.

wudubelieveit · 30/12/2023 09:13

tokesqueen · 30/12/2023 08:50

SmearFear191 you're not eligible for the HPV vaccine on the NHS once over the age of 25.

if she's been offered it by the GP she should take it, I'm not up to date with current research but i think they have shown there is still benefit to get it after becoming sexually active.....they offer the jab to men who have sex with men up to the age of 45 so the same reasoning should apply to women.

ShyTed · 30/12/2023 09:38

Of course you need to go.
if results are inconclusive they will investigate.
I was 26 when I was diagnosed with cervical cancer - picked up in a routine smear. No “cancer” symptoms or worries. All previous smears were normal (I had smears from I was about 20 due to investigating other problems)
it’s better to find out and be treated, than not know and for something to have developed beyond the point of help.

AlmostAJillSandwich · 30/12/2023 09:54

Just booked mine after it got cancelled in Sept 2022, thankyou for the reminder.

Chowit · 30/12/2023 09:59

If a screening is being offered, then grab it with both hands.
Last month I had a smear test, a mammogram and due to my being over 55, an anal probing.
Yes it's time consuming and a pain in the bum, literally in my case, but I'd rather that than death.
They're offered to save your life where possible, so take it and appreciate it.

Elfoutthewindow · 30/12/2023 10:46

@Chowit said by someone who doesn't understand the risks/benefits of screening. Did you read the leaflets? Do you understand the over treatment risks? Did you weigh it up in any way?

1967Kitherly · 30/12/2023 10:55

Please please keep going OP, it’s important.

I’ve had colposcopy's and biopsy, I’ve also had to have Lletz procedure to burn out cells and HPV. My last 2 smears have been clear but I’ll continue to go.

My doctor told me that HPV is very common and that its crucial that smears are done (that was just the advice I have been given) Results can be scary but it’s so important that you are seen and its taken care of.

tokesqueen · 30/12/2023 11:02

wudubekieveit I work as a practice nurse. As per the patient group directive she is not eligible over the age of 25. The nurse is not covered to give. The GP wouldn't have a clue about eligibility or vaccination schedules.

tokesqueen · 30/12/2023 11:06

HappyHolidai · 30/12/2023 09:03

@tokesqueen - but they don't check. They can hardly see my cervix, then immediately put the brush in to twiddle.
Anyway the screening is about HPV/cancer not polyps.

Edited

Happiholidai wrong. The screening is absolutely about a visual inspection of the cervix too. Our training centres around it. If the nurse can't see the cervix she shouldn't be doing any twiddling at all, as the sample needs to be very specifically taken from the os (centre) and transformation zone surrounding it. Saying it's not about polyps just demonstrates people's ignorance.
Practice nurse.

HappyHolidai · 30/12/2023 12:19

Anyway I'm not putting myself through it any more. If the NHS wanted people to continue then they should have not hidden information and forced women to have smears which wouldn't be looked at. The lack of informed consent is a massive problem for me and I'm not prepared to do it again.

HappyHolidai · 30/12/2023 12:21

And calling me ignorant is really not helpful.

it's that attitude from nurses that so destroys trust.

Original poster
SmearFear191 · 30/12/2023 12:43

Thank you for the replies. I've had a rethink and will continue to go for my smears. It's very sobering reading about women my own age being dx with cervical cancer 😔

It's scary to me how some go from a clear smear to cancer in three years, esp as we're told that CC is generally slow growing.

I've given my head a wobble and won't be missing any. I have children to live for.

OP posts:
MatildaTheCat · 30/12/2023 12:46

HappyHolidai · 30/12/2023 12:19

Anyway I'm not putting myself through it any more. If the NHS wanted people to continue then they should have not hidden information and forced women to have smears which wouldn't be looked at. The lack of informed consent is a massive problem for me and I'm not prepared to do it again.

So don’t but nobody is forcing anyone to do anything. You receive an invitation to a screening appointment, not a summons. I had a smear last year and was impressed by the detailed information booklet that was sent out. Unfortunately very few people actually read these things.

For anyone interested in the ethics around screening programmes there was an interesting programme on R4 this morning around 11am on the very subject.

CoteDAzur · 30/12/2023 12:51

YABU but do as you please. There are too many people on earth as it is 🤷‍♀️

wudubelieveit · 30/12/2023 13:26

MatildaTheCat · 30/12/2023 12:46

So don’t but nobody is forcing anyone to do anything. You receive an invitation to a screening appointment, not a summons. I had a smear last year and was impressed by the detailed information booklet that was sent out. Unfortunately very few people actually read these things.

For anyone interested in the ethics around screening programmes there was an interesting programme on R4 this morning around 11am on the very subject.

Show quote history

Thanks Mat I’ve had a listen to the r4 programme….I also recommend Dr Hannah Fry’s to programme she did around the time she had her c/cancer diagnosis.there’s going to be a lot of debate around c/screening in the future I suspect but I do hope they roll out self hpv testing .

tokesqueen · 30/12/2023 15:12

Happiholidai it's helpful if it dispels the myths that people peddle and enlightens others with the correct information.