do i have this right about smear tests?

[tefley]

So, last time I had a smear test, I got a letter saying I was negative for HPV and therefore no further tests were done on the sample like looking at the cells.

I haven't had any sexual contact since my last test, therefore there's no way my HPV status can have changed. So am I correct in saying there's no point in me having a another smear test unless I did have sexual contact?

I'm confused because I tried to explain this to a nurse and the receptionist at my GP clinic, but they were both insistent I come in, and I've been getting multiple texts and letters about it.

My situation is a bit more complicated than most- I have vagnismus which makes these kinds of things genuinely excrutiating. I'm trying to work through it, and I'm worried an unpleasant experience will set me back. The appointment is tomorrow and have been prescribed valium to try to stop the muscle spasms, but it just seems like a lot to go through when (if I've got it right), the sample won't even be tested?

Just to correct some misinformation I saw earlier in the thread...

HPV can be transmitted non-sexually - usually through skin-to-skin or skin-to-mucous-membrane contact. It's relatively rare, but is is possible. So even women who have never had sex of any kind would be well advised to consider regular tests.

You can buy your own speculum, and a mirror, and look at your own cervix. This is something that a lot of feminist health groups used to do - as part of getting to know and love your body and all its parts, and understand what 'normal' looks like for you.

Some women find it easier to use a speculum on themselves than have someone else do it, so maybe worth trying? Once you've experienced doing it yourself, you might also find it easier to trust an empathetic health professional to do it too.

So direct quote from my GP (as others have said): if you've ever been sexually active, your HPV status can change at any time. So a previous negative HPV result shouldn't factor into your decision to get it done again.

Thanks to everyone who pointed this out, as the thread genuinely changed my mind about attending the appointment!

Feeling pretty bleak as she managed to do it, but it was excrutiating. It was a relief that she could see the area around the urethra is all red and sore, which is why anything like this or sex is so painful, and why the vaginismus response is triggered.

She has referred onto gynae but not feeling too hopeful that they will be able to help when last time they couldn't. I just want a normal sex life.

True, anyone can buy a speculum and have a look, but the average woman might not know what looks normal and what doesn’t.

I'm sorry it was so painful OP but well done for going through with it! Here's hoping you can find something that will help soon :)

I think in general knowing what's normal for you is good.

I know that my vestibule area looks a bit more inflamed than an average womans, but I have no idea what it looked like before my symptoms started.

Well done OP, don’t even know you but very proud. It’s something that’s very easy to put off to the bottom of the list.

be kind to yourself over the weekend. You definitely deserve it x

Have you been to a GUM clinic? We can manage patients for genital dermatology also 🙂

thanks for the reply @WetBandits , i originally went to a specialist vulva dermatology clinic

They gave me a diagnosis of vulvodynia (which is pretty unhelpful as it just describes the symptoms really) and a steroid cream. The steroid cream brings the redness down but doesn't solve the problem.

I will look into GUM clinics as maybe they'll have some other ideas!

I was very upset when I received the result from my last smear test: they said they had destroyed the sample without looking at it as I didn't have HPV. I hadn't been told that this had changed and I feel like my consent had been obtained under false pretences.It was not a pleasant experience, having taken 2 people and 3 attempts.

Flowers

@HappyHolidai I completely understand and I felt like this too after my last one. I was really frustrated I'd gone through all that for the sample to not even be tested.

I think that you need to rephrase this in your mind. Your samples WERE tested; they were tested for HPV, and since that was not found, it wasn't thought necessary to do more tests. Without going for the smear, you wouldn't have had that test for HPV, and if that had instead been positive, you wouldn't have needed another examination at that point, there would have been MORE tests carried out on your sample.

Re getting a speculum and looking at your cervix now I've done literally thousands of speculum examinations over the years so I know where and how to a cervix, and what they look like. I don't think it would be at all easy to do so on yourself. The other thing to bear in mind is that CIN changes the changes in the cells that can turn into cancer -- are microscopic and INSIDE the cells. You don't see them from the outside nor with the naked eye. If you could, then it wouldn't be necessary to analyse any samples in the first place.

@mauvish
What you say is not accurate. You said that I would not have had an HPV test without the smear.

I would have sought an HPV test but without the trauma of a smear: self-administered tests are available and I would have done one of those. I said that in my original post had you read to the bottom of it.

I maintain that I did not give informed consent to my most recent smear.

The NHS has been trialling these self-tests for women who have been avoiding smears. I hope it isn't long before they are rolled out more widely. The ridiculous level of attempted-guilting and emotional blackmailing to try to force women to have smears should have been stopped many years ago. Now there is a viable alternative to invasive smears there can be no more excuses for it.

Here is a long article from a cervical cancer charity explaining all about home-testing for HPV.

Note that they point out this is the same test as is now being used on smear samples. But it's quicker, no pain, no embarrassment, no speculums, no taking up a nurse appointment... I don't understand why it's not rolled out yet given the pressure on NHS staff time and shortage of people, as well as all the other reasons.

https://www.jostrust.org.uk/about-us/news-and-blog/blog/what-hpv-self-sampling

All of that information is widely available to all women though is a range of different formats; we have to take some level of responsibility to keep ourselves informed with regard to our own health and which screening programmes are available to us. I’ve never been for a screening or vaccine that I haven’t researched beforehand.

I disagree.

Not everyone has the ability to keep up to date with this kind of thing or get information on it - particularly vulnerable women. It's the job of HCPs to keep patients informed.

And as far as I can tell - there is no way of me accessing a free HPV screen any way? Or an easy way for this to be linked to my NHS records so that they would know I had tested negative and therefore did not need a smear test?

I don't think it's unreasonable to suggest that a free and easy self swab test should be made available to women who struggle with smear tests.

I tried asking about this but got no answers as I was negative for HPV years ago but had bad cells and had to go through a painful procedure having them removed. So the new way really confuses me. Did I not need the procedure before?

No, as HPV can lie dormant for many years so may not have been active in your body at the time of your last test, or it may have been acquired between your negative test and your positive one.

Yes but isn't the question that if this happened right now, no one would have detected the cell changes via cytology as the HPV screen would have been negative?

It is confusing

If the HPV test was negative, there would have been nothing to cause cell changes in >99% of cases, so cytology is unnecessary.

HPV positive = cytology is performed
HPV negative = testing ends there, 3-5 year recall
HPV positive + cytology positive = colposcopy
HPV positive + cytology negative = 12 month rescreen for HPV, if positive again but cytology negative, another 12 month screen. If positive again at the 3rd rescreen, colposcopy regardless of cytology results.
Cell changes are sooo slow that women are safe to be on 3-5 year recall depending on their age as very little changes in the cells during this period so if they were negative 3 years ago and positive today, very little damage would have been done to the cells.

I hope that makes sense!

Just really coming back to this.

I spoke to the nurse at my GP surgery and she confirmed that NI is NOT following this protocol at the minute.

All smear tests are being tested for HPV and cell changes, However in future she does see NI moving in line with the rest of UK and only preforming HPV checks on smear tests, but there has been no consultation or date set for this.

she did also say that that if and when this change takes place, she can ask for individual tests to be screened for both if the patient requests it.

I don't think the issue of informed consent has ever been of importance to GP surgeries, nurses or the general medical profession as a whole
As another poster pointed out, practices get financial incentives to get 80%of their women smeared and some women are thrown off the practice list or denied medication for other conditions, or even an appointment at all, unless she has a smear
It's not pointed out to the women their risk of developing this cancer is low, 0.65%according to CRUK, Or that even abnormal cells can revert to normal on their own
It's assumed they're too embarrassed to go and are told patronising oh we seen it all before, don't be silly of course it doesn't hurt. ... the list is endless
Maybe things are easier for refusers today and maybe more info about risks is given? I don't know. I opted out 7 years ago
Of course it's every woman's right to do as she sees fit, but I think women are treated appallingly over smears
Dutch and Finnish women have had the option of a self test kit for years now and their rates of this cancer are among the lowest in the world

This may help - I now insert the plastic thingy myself and all problems have stopped. Before that was so painful and drawn out. Maybe try that?

please go tho - a few minutes discomfort is worth it

Not sure if someone has said this but dormant also means undetectable on a smear test. That’s why you’re repeatedly tested.

@NameInUseAlreadyAgain this post is a little frustrating because it isn't "a few minutes discomfort" for me and many other women.

It is genuinely excrutiating - comparable to when I broke an ankle - and the pain causes a flare up that lasts for days rather than just during the exam.

It would be the same whether I inserted it or whether the HCP did - as she knows what she's doing I let her get on with it

Because I would get the same result with a swab test (i.e., my sample was negative for HPV so the cells were not tested), it adds an extra layer of frustration because I did not actually need to go through the painful procedure.

Thank you, yes I had no idea so really glad I made this thread!

Told all my female friends too, to prevent anyone making the same incorrect presumption I did :)

Was only trying to help.