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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:
PlantDoctor · 29/12/2023 15:11

Given your history of abnormal test results, I would absolutely continue having the tests. I appreciate it is very stressful but it's better than the possible alternatives of not finding an issue in time. 💐

WhiteCatmas · 29/12/2023 15:11

If I were you, I’d get the HPV vaccine. Go for smears, better they’re wrong occasionally than you end up with cancer.

BeautyGoesToBenidorm · 29/12/2023 15:13

WhiteCatmas · 29/12/2023 15:11

If I were you, I’d get the HPV vaccine. Go for smears, better they’re wrong occasionally than you end up with cancer.

I couldn't agree more with this. All tests are fallible, even private ones! Please don't stop going for them.

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.

janbaby24 · 29/12/2023 15:15

Definitely keep going!

dontgobaconmyheart · 29/12/2023 15:18

It's not obligatory, it's an invitation so no, if you don't want to go then don't.

Is it a good idea to skip a regular smear though or put it off, god no.

Elfoutthewindow · 29/12/2023 15:21

I usually support those who are low risk opting out if they find them hard to tolerate.

However, you are high risk, having had HPV and dyskaryosis found. The point of smears is to catch pre-cancerous cells, and monitor or treat.

You'd be mad to decline smears with your history.

Elfoutthewindow · 29/12/2023 15:22

Have you checked how expensive colp is? Can you really afford that every 2-3 years? Will you?

FleasAndKeef · 29/12/2023 15:23

This is how screening works. The smear flags up firstly if you are HPV positive or not, and then if any dyskaryosis is present or not. It gives a rough idea of the severity of the dyskaryosis, but since its only sampling the very top cells of the cervix, it can't give a very accurate picture of what's going on.

Biopsy is highly accurate, but we can't biopsy everyone (for multiple reasons).

I've had almost the exact same journey as you OP, and I think many others will have too, because this is just the nature of the beast.

People forget that screening has downsides too- in terms of the side effects from investigating+/- treating things that may have actually just self resolved, but also the psychological harms involved.

For me, the risks of screening are outweighed by the benefits, and so I will continue to take up the offer of future smears/colposcopy, but everyone is entitled to make their own judgement for their circumstances.

PupInAPram · 29/12/2023 15:26

WhiteCatmas · 29/12/2023 15:11

If I were you, I’d get the HPV vaccine. Go for smears, better they’re wrong occasionally than you end up with cancer.

I thought the vaccine is only effective if you have it before becoming sexually active? Ready to be corrected by someone who knows better though.

WhiteCatmas · 29/12/2023 15:36

It depends on how sexually active you’ve been. It can still be useful if you’ve had a low number of partners.

GrandHighPoohbah · 29/12/2023 15:40

At your young age and with your history, it would be unwise to stop going.

electriclight · 29/12/2023 15:49

Good god of course you must keep having regular smears. I have a similar history and wouldn't miss one. I don't care about the odd inaccuracy. I consider myself incredibly lucky to live somewhere where this screening is an option and free too.

wudubelieveit · 29/12/2023 15:59

i'm not sure from your post which results were inaccurate? Was it not just that things that had been seen on the sample showed a need for colposcopy but the colposcopy, itself didn't see the same severity of problem? tbh, you are around the main age incidence group for a c/cancer diagnosis so I would most def be carrying on with smears.

Toodles2023 · 29/12/2023 16:02

Please keep your regular smears. A friend of mine got cancer at 27. It developed in the time of her first smear.

Original poster
SmearFear191 · 29/12/2023 16:08

Thanks for your thoughts, all taken on board.

I thought perhaps having a colposcopy every couple of years would balance out the risk of not having any more smears as a colposcopy is a lot more reliable.

wudubelieveit The results from my second smear test were inaccurate as they came back with severe high grade CIN3 hence the biopsy, but they were actually only CIN1 and had resolved when I went back 6m later.

They then brought me back in again for another colposcopy, I assume to check if the HPV had gone, and they did another smear during the colposcopy

That smear came back - no mention of HPV but abnormality cells detected..even though the colposcopy done at the same time ruled out any abnormalities being present at all.

If I hadn't had the colposcopy at the same time as the smear I'd have panicked all over again.

I see PP's points though. The inconvenience of results being off is still much better than doing nothing and ending up with cancer. I should be thankful I'm in the system.

OP posts:
Original poster
SmearFear191 · 29/12/2023 16:09

Toodles2023 · 29/12/2023 16:02

Please keep your regular smears. A friend of mine got cancer at 27. It developed in the time of her first smear.

I'm so sorry 😞 Was it caught early enough to be treated successfully? I hope so.

OP posts:
Cnidarian · 29/12/2023 16:15

Bless you it's been a rough ride. But you must keep going, you have a history of abnormality and need to stay safe. My neighbour also had cancer on the first smear. Thankfully it was caught early enough and she was OK, but this disease is not to be trifled with, its really important for you to stay in the system. And I'm glad for you that it never turned out serious, the alternative is so much worse.

Original poster
SmearFear191 · 29/12/2023 16:15

PupInAPram · 29/12/2023 15:26

I thought the vaccine is only effective if you have it before becoming sexually active? Ready to be corrected by someone who knows better though.

Edited
Show quote history

The doctor doing my colposcopy actually suggested I do get the HPV vaccine as it will still be effective. We had a chat about it but it's a bit of a blur and I can't remember exactly what she said, but she does think it's worth doing.

I'm going to get it within the next couple of weeks.

OP posts:
wudubelieveit · 29/12/2023 16:19

SmearFear191 · 29/12/2023 16:08

Thanks for your thoughts, all taken on board.

I thought perhaps having a colposcopy every couple of years would balance out the risk of not having any more smears as a colposcopy is a lot more reliable.

wudubelieveit The results from my second smear test were inaccurate as they came back with severe high grade CIN3 hence the biopsy, but they were actually only CIN1 and had resolved when I went back 6m later.

They then brought me back in again for another colposcopy, I assume to check if the HPV had gone, and they did another smear during the colposcopy

That smear came back - no mention of HPV but abnormality cells detected..even though the colposcopy done at the same time ruled out any abnormalities being present at all.

If I hadn't had the colposcopy at the same time as the smear I'd have panicked all over again.

I see PP's points though. The inconvenience of results being off is still much better than doing nothing and ending up with cancer. I should be thankful I'm in the system.

i dont know enough about it but i think the cell changes can come and go ,its not a static thing, as can be shown from HPV disappearing then reappearing and also how people can go from a clear smear 1 year to getting a cancer diagnosis within a short space of time. Sim ilar to you ,I had cell changes in my 30's and they gave me repeat 6 monthly smears for 2 years (all clear)before reverting to normal time scales...now obviously i have no idea ,seeing as I've never had a positive HPV test they no longer view my actual sample cells . At some point they may introduce self-screening for HPV (i'm not sure where they've got to with the trials they were doing). My youngest ever hospice patient died from c/cancer so i'm always keen to encourage women to go but i totally get that the process itself can be traumatising and i'm sorry you've had to go through all that.

Toodles2023 · 30/12/2023 08:14

Thankfully it was but she is unable to have any more children (she has one DD) due to the chemo and has lasting complications but she's here

Delassalle · 30/12/2023 08:29

I've only ever had one smear and that was in the early eighties and I've never had one since as they mucked me around giving the impression something was wrong and making me wait a few weeks to find out and then it turned out that it was just the sample wasn't able to be tested properly..

2mummies1baby · 30/12/2023 08:33

Someone I knew, who was incredibly low risk for cervical cancer (lesbian) and therefore had never had a smear test, recently died of cervical cancer aged 45. Please, please go for your smears. I know they're horrible and stressful, but they could be life saving.

Zanatdy · 30/12/2023 08:33

I’d absolutely continue having them given your previous results.

Zanatdy · 30/12/2023 08:34

Delassalle · 30/12/2023 08:29

I've only ever had one smear and that was in the early eighties and I've never had one since as they mucked me around giving the impression something was wrong and making me wait a few weeks to find out and then it turned out that it was just the sample wasn't able to be tested properly..

So you’d risk dying of cervical cancer which could have been treated because you were messed about once?