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.

@Delassalle Family history has no bearing on cervical cancer. Why do you think it has?

CC is caused by HPV which can be transferred by fingers, oral sex and full sex (with an infected man.)

It can lie dormant for years and then become more active if your immune system is weak.

The best way is to have the HPV test and if you are sexually active, you need to keep being tested.

Oh no please continue to have them! This is how screening works. I know it's a worry but honestly catching anything sooner is so much better.

I've had 3 years of numerous mammograms just in case the cysts were cancerous. It was all so worrying but I'd take that every year over having breast cancer. And this year I was ok at the first mammogram.

That's your perogative and I certainly didn't intend to cause you to feel distaste.

Please go. I have just had my last one (they stop doing them routinely once you get to 65). I hummed and haad as I've never had a recall and because of my internal physiology they are always painful. However I showed up and the nurse was lovely and made it as bearable as possible. Once again no recall and I feel that chapter of my life is now successfully over and am quite proud of myself (when you get to my age you take what wins you can get ).

@squashyhat - you should feel proud! I'm proud of you!

@RainyDaysSundays 'CC is caused by HPV which can be transferred by fingers, oral sex and full sex (with an infected man.)

It can lie dormant for years and then become more active if your immune system is weak.

The best way is to have the HPV test and if you are sexually active, you need to keep being tested.'

I'm at no risk whatsoever.

Yes at least very soon I only have to go once every 5 years, although as I had the last one at 49 I sadly have to go to the next one within 3 years. But after that it goes to 5. Hurrah!

sorry @Delassalle I don't need educating.

Women who are lesbians can get CC. Someone here left a screenshot of medical information.

It's difficult for I understand but from what you've written I don't think they've got the results wrong necessarily.

Dyskarosis is cell changes - often linked to HPV

You had HPV and cell changes on the first smear.

The HPV resolved as it does in most cases from your own immune response; but the cell changes are still there (damage from the HPV)
The colposcopy unit couldn't tell you how bad it was until they investigated further.

It would be a bad idea to stop attending for smears. Maybe book a phone consultation with your practice nurse to try to make sense of your smear history

my cousin died early 30s from cervical cancer because she didn't go for her smear and missed it before it was too late.

I think that's a good idea yes, I'm still quite confused.

From what I thought I knew, a colposcopy is alot more reliable than a smear

My latest colposcopy showed no areas of abnormality at all. No dyskaryosis. No CIN1 left over. Nothing. The doctor told me there was nothing there at all.

But the smear they took at the same time of ruling out any dyskaryosis.. came back with mild changes.

Of course you keep going.

@Elfoutthewindow it's a risk I'm willing to take for the good of my health.
The screening is less likely to kill me than breast cancer.

@Chowit you just really don't understand the risks/benefits of screening, then. Screening is complex.

OP, I'm glad you're going. With your story, I really think screening is for you.

@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).

@Elfoutthewindow I understand that my having screening is better than dying of breast cancer like some of the unfortunate women in my family.

What do you mean “not looked at”?

What a very strange position to take. Obviously YABU.

@Chowit you don't understand. You can either keep repeating that, or you could read the leaflets that the NHS produce.

Samples are checked for HPV these days. If HPV negative, they are binned. So the cells aren't looked at.

This should be explained to women before the smear, but often isn't.

As I understand once you’re HPV positive that’s it, you don’t become negative. Maybe the vaccine gives some protection over recurrences? But given that’s a risk factor for cervical cancer I’d keep going!

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

That's not correct.

@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.

A colleague of mine died of cervical cancer before she was 30- leaving 2 young children because she missed her smears. It's not worth the risk whatsoever.

No, I wouldnt stop. The worry you had was unpleasant but it is nothing compared to what my friend went through when she actually had cervical cancer. If it had been caught earlier she wouldnt have had to go through what she did.