Not sexually active but nurse tells me I need a smear

Thanks for your reply. I didn't know I can opt out of screening or writing to the surgery so I will ask for this to be done.

Thanks for your reply.

I almost went through a smear test before and it hurt for the nurse to open my vagina up to see my cervix.

That's what has put me off it, in part.

Hi thanks for your reply. Yes, I'd like to speak to informed women please.

Jay,there is absolutely no need for this to be done as you have never been sexually active. Just say you dont want it done and dont be pressurised. Phone the practice and cancel that appointment...you dont have to give a reason. It cannot be forced upon you without your consent: that would be criminal assault.  A very strong letter of complaint to the practice manager with a copy to your doctor at the practice would be very much in order.    I am totally aghast that this should happen. You are more in danger of damage to your body and possibly introduction of infection.      NO NO NO! 

Hi.  My problem is similar to Jay's -- I have been sexually inactive for the past 35 years (I am 63 years old  For a very brief period prior I was minimally active.  I cannot tolerate pap smears -- do I really need one?

Hi j-miriam

Sounds like you'd be very low risk but if you're worried, you could do a HPV self-test, that's very likely to come back HPV- and then you can forget about it. (you should be able to buy one online)

About 95% of women aged 30 and older are HPV- and many are enduring completely unnecessary pap testing - and of course, that also exposes them to the risk of a false positive and excess biopsy or over-treatment. I don't have Pap tests, never have, I knew my risk of cc was very low, while pap testing posed a high risk of excess biopsies etc.

In Australia, the lifetime risk of a colposcopy and biopsy under our program was a huge 77% (that fact was kept very quiet) while the lifetime risk of cc was less than 1% - so I made the informed decision not to have pap tests.

Now I understand HPV- women are not at risk of cc and can't be helped by Pap tests, that's most of us. So many of my family and friends endured this testing for years and many ended up having invasive and painful biopsies or over-treatment - some were left with damage to the cervix. (and traumatised by the experience)

So pleased I took the time to do my research and stood firm in the consult room.

I find it disgraceful that women have been IMO, deliberately misled about the need for this testing and have basically been pushed into testing - it's supposed to be an elective screening test that by law requires our informed consent - instead women have been pressured and even coerced into testing to achieve screening targets - IMO, that amounts to medical abuse.

On the balance of probabilities it is very unlikely you need  a smear test.   If you feel fit,have had no unusual vaginal bleeding or discharge,no pains or aches in that area you can probably feel safe not to have it.     Only you know how you are feeling and it is essential that you are honest with yourself about this and get medical help if anything does happen in the future to make you feel uneasy. I think you are not in the UK as the word "pap" is not often used here....we just say "smear". In UK if all previous smears have been clear then when the patient reaches 60 years old they are no longer called for a smear test. 

Dear Eliz,

I very much appreciate your knowledge and the fact that you are so willing to share what you have learned through research.  Thank you!

Thank you, Marina, for your helpful response.

Hi. At age 50y I stopped going for smear tests not least because, on paper, I was very low risk for cervical cancer e.g. long term monogamy since age 28y and regular tests up age 47y all normal. Age 60y I started to get symptoms followed by a diagnosis of stage 2 cervical cancer. I regret passing up an opportunity to get checked. Smear tests can be unpleasant as can any follow up investigations. But treatment for advanced cancer and the long side effects trumps them all. At the very least I would 100% say get a test to check your hpv status. If I could have a second chance I wouldn't hesitate to get a smear test. I used to console myself that cervical cancer is rare but that is partly because the screening programme is effective. I now take the view it could be you, me or anyone. It might be worth getting an appointment with your GP to discuss your issues with the test.

Hi Jane

I'm sorry to hear of your diagnosis and wish you all the best in the future.

Just wanted to mention - if it was an adenocarcinoma of the cervix, a pap test would be unlikely to pick it up - this type of cc is usually diagnosed when the woman is symptomatic, in these cases a "normal" pap test (false negative) can falsely reassure and lead to a delay in diagnosis and treatment. 

Whenever we hear of a young woman getting cc, it's usually an adenocarcinoma but they never tell us that a pap test would not have helped or that the young woman may have had a few normal pap tests. (that may have falsely reassured and led to a delay in diagnosis and a poorer prognosis) IMO, it's all carefully engineered to promote women's cancer screening and protect the programs, not women. I don't trust a word coming from the program and it's promoters and protectors because I know the evidence often doesn't support their statements. I consider a lot of their recommendations amount to bad medical advice.

It's that sort of dishonesty and the unethical measures they use to get women screened that means I have no trust in these programs. Giving women bad advice is not only unethical, it's dangerous, it doesn't help us make the best decision. 

For example: Only one doctor, as far as I'm aware, Dr Margaret McCartney, made clear that Jade Goody had an adenocarcinoma and that pap tests usually miss this type of cc, instead the program and others used her case to urge young women to screen, resulting in a lot of harm for no benefit. 

We've known for decades that pap testing doesn't help women up to age 30 but leads to harm. 

We've known for sometime too that women who are HPV-, that's about 95% of women aged 30 to 60, don't benefit from pap tests or "treatments" but we've kept screening and treating...leaving lots with health, psych and obstetric issues. 

Here in Australia, it's shocking to know that 77% of women in this program have had something done to their cervix - it's madness. The cervix is there for a reason...and it's heart breaking (and frightening) to know that most of the damage was avoidable.

There's something wrong with the way women's cancer screening was put together and promoted, the whole area needs urgent change and IMO, that starts with addressing outdated attitudes that don't respect women or our legal rights.

We hear about the unscreened woman who got breast or cc, but don't hear about the huge numbers harmed by screening and over-treatments. (some have even died) 

IMO, it's to scold and judge the unscreened woman (treating us like naughty children) and to scare other women into screening and to encourage them to also judge that woman. It's completely unacceptable, we're adults and like men, we're entitled to accept or reject screening for any reason - we should screen (if we choose to) in an informed way, not through fear, pressure or judgement.

Here in Australia (up until this year) pap testing was pushed from age 18 or so, VERY early, and 2 yearly until around age 70, so excessive testing, this led to very high (and hidden) levels of over-treatment (and damage) for NO additional benefit to women. It's bad medical advice to recommend such excessive pap testing, but it went on for decades. My own younger sister was harmed by pap testing and an unnecessary and avoidable cone biopsy.

Our new HPV testing program will start at 25, even though there's clear evidence that HPV testing should not happen before age 30, Once again, we'll ignore the evidence

and lots of young women will endure unnecessary and avoidable colposcopies and biopsies.

Our new program calls for 5 yearly invasive HPV testing until age 72, when 5 tests in total would be sufficient, some women might choose to have just one - those HPV- and no longer sexually active or confidently monogamous. (but they won't get the information or the option)

You're right, the HPV test gives you important information, HPV+ and aged 30 to 60 and you have a small risk of cc, HPV- and you're not at risk of cc, the latter group of women, and that's 95% of us aged 30 to 60, could either re-test for HPV every 5 or 10 years (depending on age) or if no longer sexually active or confidently monogamous, forget about further testing.

BUT we don't get the information OR the option - in fact, they block better options to force women into the program. 

They claim this is about saving lives, but stand in the way and block access to better and preferable testing options, things like reliable HPV self-testing.

The Dutch HPV self test is reliable and easy to use, women here in Australia could buy it online (if they found out about it, it was never promoted so only for informed women) until recently, it's approval for sale expired shortly before our new HPV program started, I assume in an attempt to force more women into our program. If you want the inferior HPV self test offered by our program, you have to decline the invasive HPV test for 6 years or plead your case to a GP, they won't even trust women to do the test in their own home, the swab must be carried out at the doctor's surgery. (in a private area)

The speculum exam can be intolerable/very painful, especially for older women, and cause a lot of damage - tearing, bruising, soreness, UTIs etc. I find it cruel to push these women into an invasive pap or HPV test, when HPV self testing is readily available and when almost all of these women will be HPV-

I blame the system for some of these rare cases of cc, for giving women misleading and incomplete information, for blocking access to better and more acceptable ways of testing, for early and/or traumatic testing and over-treatment experiences (most were avoidable)

I don't know anyone with cc, but know a lot of women negatively affected by these programs, with continuing health, psych and obstetric issues.

The incidence of cc was falling before screening was even introduced, I think the program has saved a few lives (you can't save large numbers when the cancer was always rare in the developed world) but screening has been done in such a way that heathy women have paid a terrible price - awful levels of over-treatment.  

It's poor that in 2018 these program IMO, still choose to control and mislead women, they'd rather we get cc than respect our legal rights, give us real information, respect informed consent, and provide access to decent HPV self-testing options. (even if women have to pay for it or subsidise it)

I don't act on fear, I act on the evidence, I think that's the best way forward but it's still the case in women's cancer screening that we can't trust these programs, we have to do our own research so we can make the best decision.. We might also have to hunt online for HPV self testing or plead our case for HPV self testing with our GP, (if we're informed and know that's an option) that should not be necessary.

So chatting to your GP about pap testing is unlikely to be all that helpful, most will simply recommend the program, some will strongly recommend the program.

Also, many GPs seem to have accepted the spin put out by these programs as the evidence. I think the best approach is to go in armed with the evidence and if you want self testing, stand firm. 

Kind regards

Elizabeth

Eliz52, how or where can I get a self test for HPV please? Also, I heard it can be passed from hands to being monogamous/faithful may not prevent it.

Hi Tee

Not sure if you're in the UK - but in many countries, you can order a HPV test online, I'd search online.

The Dutch invented HPV self-test device was available online here in Australia until shortly before the new HPV program started, the approval for sale expired at that point, now women have to search for a another HPV self-test online, obtain a self-test overseas or ask their GP for HPV self testing.

Barriers have been placed around self testing here, they know many women would prefer to self test, for some reason the program has a problem with that and so attempts to pressure women into the invasive HPV test offered by the program. Initially, I heard that women had to be "overdue" (you can never be overdue for an elective screening test) for 6 years before they could have HPV self testing, and it has to be carried out in a private area at the medical clinic, you can't do the test at home, but if women stand firm and make clear they will decline invasive testing, some GPs may give you the self-test without having to wait for 6 years (you may have to pay for it)

It's easier to obtain HPV self-testing in other countries like Singapore, The Netherlands, the UK etc.

It's cruel to put women through a speculum exam when there's a non-invasive alternative, no wonder more women are turning their backs on screening - I think more women are getting to the facts too and are making an informed decision not to screen.

All the best

Elizabeth