scared to have another cervical smear test

Jo, I've spoken to quite a few women over the years who've suffered pain and bleeding for a few days, and even weeks, after a pap test, especially one performed by a rough and uncaring (or incompetent) person. It makes me furious that so many women are negatively affected by this testing when ALMOST all women are HPV- and cannot benefit from pap testing. Heads should roll.

To think screening for an always-rare cancer has led to such widespread harm and distress. (and fabulous profits for vested interests)

I hope things settle down shortly for you. I'd urge you to do some reading and make an informed decision about further screening. You can even test yourself for HPV easily and reliably, there's a 95% chance you're HPV- and not at risk of cc and cannot benefit from pap testing...not that any doctor will tell you that.

The best decision I ever made was to do my own research, make an informed decision and stand firm in the consult room (and doctor shop, I found a decent and respectful doctor), I've just turned 57 and have never had a pap test. MOST women my age who joined the program have had something "done" to their cervix, such is the madness of this testing. (the lifetime risk of cc is 0.65%....less than 1%)

Hi eliz, just been catching up on all the latest hear on this subject, im a bit confused now, just put in how is hpv diagnosed on google and this came up

Traditionally, genital HPV infection has been detected as abnormal cell changes on a Pap smear, a test used primarily to detect cancer of the cervix (the lower part of the uterus or womb) or conditions that may lead to cancer. During a Pap smear, the appearance of cervical cells is evaluated under a microscope

This is giving the impression that the hpv infection is shown as an abnormal cell picked up on the pap test. what was it that that Jade Goody died of from big brother and could she had been spared her life if she had been given the pap test? Im not trying to make things complicated hear but im still confused a bit. put it down to my foggy menapausal brain!

Hi Susan

Yes, it's true that some abnormal pap tests are caused by HPV, but many are false positives caused by inflammation (condoms, tampons) hormonal changes (pregnancy, menopause) trauma, (childbirth) being young (young women (under 30) produce the most false positives, the pap test picking up transient and harmless infections or normal changes in the maturing cervix) 1 in 3 pap tests WILL be "abnormal" in women under 25. (the UK stopped testing women under 25)

If a woman wants to screen though, she could simply have a test to determine her HPV status, that's by the HPV test (it's taken in the same way as a pap test) or through self-testing with something like the Delphi Screener or Tampap.  We know that HPV- women are not at risk of cc and can't benefit from pap testing, that most women.

Jade Goody had an adenocarcinoma of the cervix, an even rarer form of cc and one usually missed by pap testing. It was disgraceful that her cancer was used to scare women into pap testing, the reality is these women tend to get a "false negative" pap test result so the pap test might actually disadvantage her, falsely reassure, and she might delay seeing a doctor for symptoms and so receive a later diagnosis/poorer prognosis.

Jade Goody also, had a painful and traumatic "treatment" for abnormal cells when she was about 16, I have no idea why a doctor would be pap testing a teenager, that should have been the subject of a formal complaint, and to actually do a procedure on her is horrifying. 

The sad fact is pap testing does not prevent these very rare cancers in young women. (HPV testing is not recommended before age 30 either as about 40% would test HPV+, we know almost all will clear the virus naturally within a year or two) It's the roughly 5% who are HPV+ at age 30 that should be offered a pap test.

The Dutch and Finns have never tested women before age 30, these women are advised to see a doctor promptly if they develop symptoms.

There is no doubt in my mind that we'd save more lives and spare huge numbers of women from painful biopsies and damaging treatments if we respected the evidence and informed consent.

I think Jade did have a pap test that was abnormal, but she delayed treatment, hardly surprising when she'd been through that early traumatic experience. I recall she said that she didn't think it could be necessary to have any more treatment because they'd already removed abnormal cells when she was about 16. Without that early experience, she might have seen a doctor promptly when she developed symptoms.

Not one country in the world has shown a benefit doing pap testing on women under 30, despite pap testing, but young women produce the most false positives. So it's risk for no benefit.

So pap testing is a screening test for women with no symptoms designed to detect/prevent squamous cell carcinoma, the more common type of cc (but still fairly rare)

A high grade strain of HPV is necessary as a first step to the future development of cc, MOST women clear HPV in a year or so, but in rare cases these women go on to develop abnormal cells and may go on to invasive cervical cancer. We don't know why this small number of HPV+ women go on to develop cancer, some say HPV+ plus an impaired immune system, some say HPV and smoking, the research continues, but we do know that you must have HPV to be at risk.

Currently women with abnormal pap tests, usually CIN 2 or CIN 3 are "treated"...it's just that most of these women would have cleared the virus and would not have developed cc. 

HPV testing is a better test (for those who wish to test) because it identifies the small number of women who are "actually" at risk of cc, those HPV+...these women can then be offered a 5 yearly pap test until they clear the virus or need treatment. This approach means the 95% of women aged 30 to 60 who are HPV- are protected from false positives, excess colposcopy/biopsies and potentially damaging over-treatment.

Population pap testing harms too many women who are not even at risk of cc (HPV-) These women have paid a heavy price with these programs with huge numbers over-treated and harmed after false positive pap tests. Here in Australia thanks to early screening and serious over-screening 77% of women will end up having a colposcopy and biopsy, many end up having "treatments"...the cancer itself has a lifetime risk of 0.65%

We could have spared many of these women from these unnecessary biopsies and treatments with evidence based testing, and now we could take almost all women out of pap testing with HPV primary and self testing (the right way, like the new Dutch program)...these women would then be out of harms way.

Hope that helps...

"Currently women with abnormal pap tests, usually CIN 2 or CIN 3 are "treated"...it's just that most of these women would have cleared the virus and would not have developed cc"

Note this also, includes some women who are HPV- but have produced an abnormal pap test. My younger sister was unlucky enough to produce an abnormal pap test and ended up having an excess cone biopsy, the tissue removed was normal, they suspect that a new brand of tampons had caused inflammation. Naturally, it was a very bad experience, but prompted her to do some research so she could make an informed decision about testing in the future.

Just to clarify doing HPV testing first takes most women OUT of pap testing, you then are left with about 5% of women (aged 30 to 60) who are HPV+, these women should be offered a pap test. The women who are HPV+ and also, produce a CIN 2 or CIN 3 pap test result are those at risk of cc. Using HPV and pap testing is this way means we focus on the small number actually at risk. I imagine HPV+ women who produce a CIN 2 or CIN 3 would be watched closely and would probably be referred for some sort of treatment.

 

Thanks eliz so what your saying  the HPV test that can be done another method besides the painfull smear test and that we can purchase this ourselfes.

Sue

Just Google a search under:

HPV self test kit

It will come up with a number of suppliers and private clinics which will send you one in the post, but it will cost you about £45.

It will look like a largish Q-tip, and you just stick it up and take a swab with this, and send it back to them in the pot. They will tell you if you are HPV positive or negative within a few days.

If positive and you are over 30 you might consider biting the bullet and getting a smear, but if negative, you are at no risk of cervical cancer. HPV urine tests, just like a pregnancy test which you hold in your urine stream have been developed and are successful, but they don't seem to be available in the UK yet.

If you search under :

HPV self test kits images

you get some pictures of them.

Sue, yes, there are 2 approaches, one harms a lot of not-at-risk women, the other focuses on those actually at risk. (HPV+)

With the current approach, the system tries to pap test as many women as possible and then they refer women with an abnormal pap test for colposcopy etc. (usually CIN 2 or 3)

The HPV approach (carried out the right way - watch the Dutch) means women are offered a HPV test or can self-test for HPV at age 30 and you can then identify the roughly 5% who are HPV+

These are the ONLY women who should be offered a pap test, these are the only women with a small chance of benefiting from a pap test.

HPV Today, Edition 24, sets out the new Dutch program, which is basically what we're talking about, IMO, it will be the best program in the world for those who wish to test BUT MOST women will never be offered this program.

It goes even further...those women who test HPV- (MOST of us) and are also, no longer sexually active might choose to forget about all further HPV testing. (some HPV- women who are confidently monogamous might choose to do the same thing)

Women should be offered evidence based testing, one that protects those of us who cannot benefit (HPV-) but that also, identifies those at risk. (HPV+)

Excess makes a fortune for doctors, specislists, pathologists and day procedure - they would not welcome a program that concentrates on 5% of women, they prefer to have the masses in for regular pap testing and fill day procedure with women having biopsies etc. They KNOW MOST of these women would be HPV- and cannot benefit, but they couldn't care less. Given women have never received real information on screening, they can continue to do unnecessary pap tests, biopsies etc. 

Dear Eliz

Thanks for your reply. Its a disgrace but the NHS tactics don't shock me as I've had similar experiences with a separate issue of what was a debilitating illness until I did my own research and learned what the cuse was - as opposed to taking masses of drugs which provided no cure. The medics just told me to give up work and claim benefits - no concern for my quality of life and thinking outside the NHS box to find a way to recover. I thank God that's behind me now. So, back to cervical screening, I'll look in to it further when time allows but my gut feeling is I'll take alternative measures such as HPV testing. Thanks very much for the information on this. But, right now I'm in quite a bit of pain 8 weeks later.. Kept me awake for part of the night. Any tips on how to reduce pain? I wandered if there is any form of local pain relief or anti inflamatory to be applied to the cervix?

Hi Jo forgive me for asking but what on earth have you been through to still be suffering 8 weeks later. It wasnt the pap test was it?

Sue

Thanks for that, i will keep this info

Sue

Yes, I was fine before the cervical screen.. The pain improved after a while but has got worse again :-(

This is awfull, have you been back to report this to the doctor and been checked out to see if all is ok.Not that your going to want to be probed about anymore. who did the pap test, was they even qualified?  Can i ask what age you are as they say it gets more painfull after the menapause or during. which was my case and flipping painfull too.

 

Thanks. I've just taken codeine again for the pain. I'm in my mid 30's. It was a nurse who did it. I think a nurse practitioner. She seemed to take 2 long scrapes, she said to make sure there were enough cells for testing. I reluctantly saw another nurse yesterday. She took a swap to check for infections, she wouldn't tell me what kind and didn't seem to like any questions and was rather stern.. Also a urine test which showed no infection. I don't plan on allowing anyone to scrape anything again. Will wait to get swab test results.

Did your pain subside after some time?

I ended up with a bruised urethea and problems for weeks, it did adventually go along with the adomanal ache as well, same thing a nurse, said she was left handed and couldnt find my cervix, she kept pushing so hard to try and find it, i was gripping the sides of the couch, never experienced anything like it before in the previous years until this one. probaly due to menapause i dont know. you probaly have some sort of bruising which will take time to heal maybe, its all not good is it.

I see. Good to hear it went eventually. No its not good.. How did you discover it was bruised - more testing?

I didnt have to be tested, i felt it, i wont be having any more.

Sue

Was it the scraping that was painful or putting the actual speculum in ?? ... I had to have swabs ( testing for things like thrush and STI's ) . It sort of surprised me as I don't cheat or anything ... That was the most painful thing for me , I thumped the wall cos of the pain ... Can't stand having that done again ...

Hi i know this question wasnt for me but it was having the speculum inserted as she couldnt find my cervix so kept pushing and pushing, im very long inside and i think the speculum was to short maybe. But apparently these pap tests hurt more once pass the menapause. any truth in it , well it was in my case.  

Don't worry ... I'm 38 Years old still have periods all be it they are irregular ... For me it was to do with having the speculum in ... I'm just worried as I had things like this done before and it wasn't as painful ... Now my brain is thinking allsorts ...