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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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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:

Chowit · 03/01/2024 11:25

@Elfoutthewindow we'll just have to agree to disagree on this issue.
Have a lovely day.

hangingonfordearlife1 · 03/01/2024 12:27

Jessiepaintyourpicture · 03/01/2024 07:52

As I understand once you’re HPV positive that’s it, you don’t become negative

That's not correct.

It is technically correct, you can't get rid of hpv. you can test negative if not having a flare up but once you have it it's for life.

ArseInTheCoOpWindow · 03/01/2024 12:37

Jade Goody

RainyDaysSundays · 03/01/2024 17:00

https://www.jostrust.org.uk/ A wealth of info here for anyone seeking medical facts and answers to questions.

RainyDaysSundays · 03/01/2024 17:03

hangingonfordearlife1 · 03/01/2024 12:27

It is technically correct, you can't get rid of hpv. you can test negative if not having a flare up but once you have it it's for life.

Show quote history

@hangingonfordearlife1 The FAQs on this website doesn't say that (about having HPV forever.)

https://www.jostrust.org.uk/information/hpv/faqs

It says most people clear it within 2 years but some people don't (and then it can lie dormant.)

There are different types and cold sore HPV can lie dormant but the type that causes CC can be cleared by the immune system.

Original poster

SmearFear191 · 03/01/2024 17:24

zusje · 02/01/2024 22:28

@SmearFear191

A colposcopy is just the name of scoping (seeing) your vagina and cervix. Comes from the greek word for vagina which is Colpos. Same as a colonoscopy is someone seeing the inside of your colon, gastroscopy the inside of your stomach etc. It's great for obvious, naked eye abnormalities, ie polyps or abnormal areas of your vaginal lining or cervix but cannot tell you what happens on a cellular level (same way you would see swelling/redness or a rash on your skin but wouldn't be able to tell what caused it unless you took a biopsy).

A smear is basically a very superficial scraping of your cervical wall. Think same idea as if you took a sharp knife/scalpel and scraped it over your skin until you started seeing a bit of blood. The point of it is to collect a sample of tissue, which is then examined under the microscope to have a look at what the individual cells look like. This is far more sensitive in determining early stages of cellular abnormality (like cells that are looking abnormal or are multiplying at a higher rate/number than you would expect). So a smear is much more sensitive in detecting abnormalities BEFORE they are visible with the naked eye.

If the smear comes back abnormal, the reason they do the colposcopy is because that then gives them a better look for any obvious abnormalities, which would be the spot to choose to take a biopsy, which is removing a larger piece of tissue which then is fixed and examined at the lab with more powerful microscopes to get more information. The other reason why a colposcopy would be necessary at that stage is the fact that you need to be able to properly see when you take a biopsy to avoid any large vessels and to make sure any bleeding is controlled if necessary.

I hope this helps with any confusion, but by all means call your doctor/nurse and ask them any questions you may have further (for full disclosure I'm a vet and not a human doctor or nurse, but the concept of sampling and lab analysis is similar for all species).

This is very helpful, thank you 🙂

OP posts:

Original poster

SmearFear191 · 03/01/2024 17:26

RainyDaysSundays · 03/01/2024 07:54

@SmearFear191 My understanding is that a colposcopy is a look at your cervix with a powerful magnifying lens, using a dye which they paint on the cervix and it shows up areas that look suspicious and show cell changes. They can take a biopsy at the same time.

It is JUST possible that very minor changes won't show up this way.

Likewise, if someone has a smear and it comes back with CIN1 changes, they usually monitor it to see if it regresses.
But if it's CIN2 or CIN3, they do a colposcopy to identify the areas that look suspicious (and usually take a biopsy.) Again, CIN2 is often monitored in women under 25 who clear the virus but in older women they often use Letz to get rid of the cells.

There's a lot of helpful info online with Jo's Trust and the Eve Appeal. They also have free helplines. You might find it helpful to read their websites.

Show quote history

This is also very helpful thank you 🙂

I appreciate all of the replies. I'm definitely not going to stop having my smears.

OP posts:

m4rylou · 13/03/2024 10:08

@SmearFear191 after your most recent smear results came back with low grade changes but the colposcopy that you had done at the same they said couldn’t see anything what happened? did they get you in again for further testing?

i’m in same position i had a smear & colposcopy at the same appointment, colposcopy she said couldn’t see anything abnormal but my smear came back low grade dyskarosis, currently waiting for my gynaecologist to contact me with what will happen next as only got my results a couple of days ago. So just wondered what happened for you with the conflict in results?

PlumbersWifey · 13/03/2024 10:12

I had abnormal results and had the procedure where they cut away the bad cells. When I went for my next smear how they do it had changed and they only check if you have HPV is it? I've never had that so was my painful first procedure a waste of time or are people going to be missed?

ManchesterLu · 13/03/2024 10:29

I swapped to at-home HPV testing when the smear tests changed to testing HPV primarily.

My last smear was clear, and my HPV tests have all come back clear too. If they ever came back positive I would go for a smear. But seeing as the NHS test is now only an HPV test, I see no need to put myself through it when there's another option.

I take this decision, on balance, down to my own personal circumstances. I have no "risk factors" and, as I said, keep an eye on my HPV status.

GETTINGLIKEMYMOTHER · 13/03/2024 10:53

The only person I know who’s been told she definitely didn’t need to have any more smear tests, was someone in her 40s who’d genuinely never had sex, and evidently had a phobia about anything entering her vagina, would clam right up, so smears were particularly unpleasant anyway.

Anyone else would surely be daft to turn them down - we all know they’re not pleasant but they’re soon over.

Original poster

SmearFear191 · 13/03/2024 11:29

m4rylou · 13/03/2024 10:08

They invited me back for a repeat colposcopy and smear in 6 months time from the most recent abnorml smear so I imagine that will be what happens with you.

I find it all quite confusing as I had initially thought that a colposcopy with no abnormality is essentially the all clear.

On my results letter telling me about the low grade dyskaryosis there was no mention of HPV this time so I don't know if my body has cleared it or not.

Hope all goes well for you.

OP posts:

Auburngal · 13/03/2024 11:49

On the subject of smear tests, they should make them more bearable.

I cannot stand the pain of the speculum - even a small one. Last time I had it at my GPs, the nurse was heavy handed and I was bleeding for 2 days and in so much pain. Fortunately I was off on annual leave. Only had that time off as had gallbladder removed 8 months before and had annual leave put back into my allowance.

The other two times I went to hospital to have smear tests. My legs were put into stirrups (legs up) and more bearable but it was the pain of the speculum that was the main issue.

In November after waiting 13 months I finally had the smear test under GA. As had a history of severe pain, bleeding etc - it was the last resort. Though a PITB with going to hospital for a pre assessment and waiting in hospital on day of test. Plus got the following day off work too. Colleagues who can have STs done pain free at doctors need to have it done on days off.

My cervix slopes and kinks. That’s why I find STs so painful

m4rylou · 15/03/2024 09:56

@SmearFear191

Yeah i did wonder if id get a repeat colposcopy/smear in 6months time again so thanks for sharing your experience. My smear letter did include HPV+ positive result, so seeing as yours didn’t maybe that’s a good thing🤞🏻

I’m completely with you there, i was always under the impression that a colposcopy was a much more accurate results, as they look at the cervix as a whole rather rather than the smears which are just a sample, i thought if during the colposcopy that they couldn’t see anything that meant it was all clear but i guess not🙃

Good luck and do keep this updated in the future when you do go for the follow up appointment.

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