Not to have routine smears anymore?

[SmearFear191]

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.

I am surprised at your age that you didn't get the HPV vaccine when it was administered in school?

Definitely get it.

But it's not a good idea to ask about smears on here because most MNers seem to think that not having them means you will get cancer. They seem to forget that cervical cancer is rare and the smears are to find it (or more accurately cell changes that may (but may not) lead to it).

Keep getting the smears as it will likely stop being this stressful. I previously was told I had high grade changes which turned out to be lower than they thought, so that clearly does happen. I had treatment to my cervix then another one or two abnormal results but they have all been normal for several smears now to the point I am back on three yearly screening instead of yearly which I was on for probably a decade!

I thought you were going to say that, like me, you have only had one partner and both of you were hpv free. I reject the smear to every 5 years because the chances are very low anything is wrong.

But if you have had abnormal smears please please keep doing them.

Don't call a woman "silly."

Why would you think a lesbian would be incredibly low risk for cervical cancer?? Anyone can have HPV and it can be passed on by touch in or around the genital area, there's no link to PIV intercourse.

You are very lucky but your response is a bit angry seeming. You would actually miss out on the benefits of smear because nearly 40 years ago you feel you were mucked around!

OP, all screening programmes come with the potential disadvantage of false negatives. The data and my personal opinion is that the benefits outweigh these negatives. You obviously have quite a 'dynamic' cervix. I would get the HPV vaccine and continue with screening. Having been through your experience so far you may find your anxiety lessons until you receive definitive answer.
I would add that I teach a child whose mum died from cervical cancer I her 40s. A really delightful child and the mum is missing watching that. The child also gets upset every Christmas especially. It's very sad. There are no certainties in life, but I would always rather stack the odds I can affect in my favour.

I would add that I teach a child whose mum died from cervical cancer I her 40s

Did she have regular smears?

Please PLEASE keep going for screening! High risk HPV infection here too, low stage dyskaryosis but looked high grade through the colposcope when seen by two separate consultants. I had treatment and remember the fear whilst waiting for it. It’s so important to pick up any pre cancerous changes early - you are still so young.

I assumed lesbians were low risk for cervical cancer since, as recently as 10 years ago, I was told by multiple nurses at my GP surgery that I didn't need to get a cervical smear test. The same is true of other lesbians I know. The NHS website also states that HPV is more easily passed to women through heterosexual sex.

The nurses at your GP surgery need retraining then, that's terrible advice. I can't currently see anything on the NHS website saying that, perhaps it's been updated since? But the section on screening specifically says you're still at risk of cervical cancer if you are lesbian or bisexual, and that HPV can be passed on through oral sex or sharing sex toys.

I have worked in a related area for over 20 years and we have definitely been advising lesbians that they should consider screening for as long as I've been in the job.

Good, keep going, they are lifesavers.

Also to clear something up, dyskaryosis isn't something that's visible with the naked eye. It refers to an abnormally nucleated cell (basically when cells are abnormal they multiply in a much higher rate than normal cells, resuling in multiple cells with multiple nuclei, whereas normally most cells should have 1 nucleus as they aren't dividing/multiplying to create new cells). You can only see those changes under a high power microscope, so your cervix may look absolutely normal with the naked eye but still have dyskaryosis on a microscopical level. Hope that makes it clearer that no result was "wrong" just depending on what you're looking at (how many layers of cells, how big a piece of tissue you have, what types of stains you use and how powerful your microscope is) you can get different results with different tests!

Please keep going for all smears and other advised tests.

My DSD discovered she had CC at 21.5yrs when, in theory, she was too young to need a smear. Sadly diagnosed too late and could not be saved.

I can see that the inaccurate results are annoying but please don't let that discourage you. Let the NHS take care of you.

I'm afraid I don't know and it would be inappropriate for me to ask. My point really was that seeing the potential fall out I try to stack the odds in my favour.

Oh I totally agree that it's terrible advice! Low risk doesn't equal no risk.

Sorry, it's on the Gov.uk website, not the NHS website: https://www.gov.uk/government/publications/cervical-screening-lesbian-and-bisexual-women/cervical-screening-for-lesbian-and-bisexual-women#cervical-screening-is-not-just-for-heterosexual-women
Fourth paragraph down under 'The cause of cervical cancer'.

Please carry on having your smears. I have mine next week. Its just one of those things. Any test can come back with results that aren't always correct and can be re tested. I understand the stress and upset and worry. But its still important

I would just keep getting them. My first smear at 25 showed HPV, I had a colposcopy which showed CIN1, I then had to have smears every year for a while and a repeat colposcopy. Eventually the HPV cleared by itself and I am back to 3 yearly. Keep yourself in the system. I know someone who died from cervical cancer in her late 30s unfortunately.

It’s not something I’d miss. I had a dodgy smear after my son was born and had cold coagulation treatment on iffy cells. Every smear since has been clear but if I’d not been having them, chances are I’d be dead.

I understand that screening can possibly save lives.
Given that you don't know anything of me or my employment, then I find your comment rather silly.

No, you were using another woman's tragedy to make a point. You don't know if she had regular smears and the pre cancerous changes were missed.

@Zanatdy no family history and I've survived this far.

I haven't claimed that I do. I'm not using anyone's tragedy. I'm encouraging the poster to take the opportunity for screening from scientific and real life points of view. You don't need to take offence at any of this.

You don't need to take offence at any of this

I'm not taking offence. I found your post distasteful.

@Chowit

And do you appreciate that screening can kill, or lead to lifelong harm?

Not much of a risk with cervical, but with colorectal, or breast, etc.

No screening is without risks, or should be taken without a thought of "this may be good at a population level, but is it right for me?"

Get your smears.

Few deaths are as horrific as cervical cancer. The worry about results is more than worth the pain of treatment.

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.

@SmearFear191 Has anyone explained that the cells can be different on different parts of the cervix? A smear might show a certain grade of CIN and a colposcopy might show differently.

So the smear may well have shown cells that were CIN3.
AND as you have suggested, your body can 'fight' the changes and sometimes cells revert to normal. However, any CIN3 change should be monitored.

I have a friend who had the colposcopy and the Letz treatment. She was in her early 30s then and advised the vaccine wouldn't help as it was too late.