Persistent low grade changes-treatment

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hi everyone, I'm new here ??

My last two Pap smears have come back with low grade changes, both times I had a repeat Pap smear in 12 months times with the same result and both times I have had a colposcopy that came back all clear, no infection, no cell changes, nothing at all.

I just had another repeat Pap smear after another low grade change, they want me to have my cervix lasered now. I have an appointment to discuss everything in two months times.

Anyway my gripe is, the Pap smear is only an indicator test, the colposcopy is the real test, and both times mine has come back clear so I am thinking I am getting a false positive reading on my Pap smear otherwise the colposcopy would show something so I am totally against getting anything lasered , why would they want to laser my cervix if the test result is clear! I don't get it! When I originally said this to my GP she said oh ithey are just following protocol that's why they do it! 

I am 48 and up until the last few abnormal Pap smears I have never had any problems with my Pap smears and I have no other symptoms ie: no spotting, no bleeding, no painful sex etc etc.

Anyone else ever had a similar problem with their Pap smears and I have a right to refuse treatment don't I?

Thanks so much for reading, sorry it was so long!

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  • Posted

    Hi Marion

    False positives are more likely when women are approaching/going through or post-menopausal. I agree with you, why laser a healthy cervix? It makes no sense at all...

    The Q is: are you HPV- or HPV+?

    If like about 95% of women aged 30-60 you're HPV- then you can't be helped by pap tests, colposcopies or anything else.

    The ONLY women with a small chance of benefiting from a 5 yearly pap test are the roughly 5% of women aged 30 to 60 who test HPV+

    You can test yourself for HPV too, no need for a speculum exam.

    The Dutch do not offer pap testing to HPV- women, IMO, they have the best program in the world for those who wish to test, 5 HPV tests or HPV self-testing at 30,35,40,50 and 60 and a 5 yearly pap test is only offered to the fairly small number who test HPV+ (about 5%)

    This saves more lives and takes most women out of pap testing and harms way, it saves scarce health resources and greatly reduces excess biopsies and over-treatment.

    I don't have pap tests at all, HPV- women cannot benefit, but they can certainly be harmed

    All the best

    Elizabeth

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    • Posted

      Hi Elizabeth, thank you SO much for your response ! All my family and friends think because the Dr says I need lasering or a cone biopsy I should do it! I disagree, if I was CIN 2 or 3 that would be different but I am not and the colposcopy always comes back normal. 

      I don't know re-HPV, all I got was a pamphlet that says most low grade changes are due to HPV but that's it? I will ask when I see my Dr though. I am trying to get as much info as I can before I see her....I read last night that having endometriosis can affect Pap smear results too? I have endometriosis....I can't find too much info about it though. Unfortunately I am in Australia, we don't seem to be as advanced/up to date as the Europeans ?? Thanks again for your support! ??

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    • Posted

      Hi Marion

      I'm Australian too, I've never taken part in the Aussie program, it's excessive and greatly increases the risk of a false positive and over-treatment...with no additional benefit to women. We also waste scarce health resources.

      Women here have been horribly over-screened and as a result, we have high excess biopsy and over-treatment rates, damage that was mostly avoidable. My younger sister had an unnecessary cone biopsy, a dreadful experience. The lifetime risk of cc is 0.65%, it was always a fairly rare cancer, the lifetime risk of colposcopy/biopsy under our program is a huge 77%

      Our program will finally change next year but continue to ignore some of the evidence and once again, side with excess; excess does not benefit women.

      We'll scrap our excessive pap testing program and move to 5 yearly HPV tests (like a pap test) from age 25 to 72 or so, FAR too many tests and starting too early. The evidence says HPV testing should not occur before age 30 and 5 tests are enough - also, we'll lock away HPV self-testing until women decline the invasive HPV test for 6 years. (unless women are aware enough to know they can buy the test themselves online or through their GPs) You might have to stand firm if you want to self-test, our GPs get target payments for pap testing.

      It's unacceptable to put barriers around self-testing, the speculum exam can be intolerable/painful for some women, esp. post menopausal women.

      You can get the Dutch invented Delphi Screener here, but now have to nominate a GP on the order form, the program was obviously concerned that more women were getting to the evidence and walking away from our program. I feel they protect the program, not women.

      Some women might test once only, those HPV- and no longer sexually active or confidently monogamous.

      You're wise to be cautious, I thank my lucky stars I smelt a rat and did my own research and I stand firm in the consult room. My file is marked, "No pap testing" and more recently, "No breast screening", both informed decisions (the Nordic Cochrane Institute (go to their website) is the best source of real information on breast screening, over-diagnosis and over-treatment is a serious risk)

      All the best

      I'll send you the details of a great website, full of real information

      Elizabeth

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    • Posted

      Thank you for the info, I'll check my pm for the website in a sec.

      How did your GP react when you said no to the Pap smear? 

      Can I ask what age group you are in.? If you don't want to answer that's fine ??

      I am arming myself with as much info as I can before my appointment but I am going to refuse to have another colposcopy and lasering and or cone biopsy etc . Pap smears in themselves don't bother me but I believe I am getting a false positive result so I do think the test is a waste of time really, all it's done for the last four years is cause my anxiety and stress over the result.

      Thanks again, I really do appreciate your time.

      kind regards Marion

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    • Posted

      Hi Marion

      I discovered as a young woman that we were just expected to have pap testing with no real information, many women were coerced into testing simply to get the Pill. (no pap test = no Pill, this would be like saying to a man, no Viagra without a colonoscopy)

      I knew the test was elective, according to the law (informed consent) and proper ethical standards, I still find it concerning this has been largely ignored here in favour of coverage/reaching targets.

      I've also found most of the information is more a sales pitch for the program, not a balanced presentation of risks and benefits.

      I went doctor shopping and found a GP who respects my right to decline a screening test, just as a man might decline a screening test. I was about 35 or so when I found a doctor, I knew I could work with her into the future. We don't need to explain ourselves, we can just decline, but I decided to reassure my GP, so she knew I was making an informed decision.

      You might find pap tests become painful as you get older, and even though you don't mind them, if you're HPV- and can't benefit from them, but can end up having excess biopsies etc. after false positive results, you might decide they're not in your best interests.

      Certainly women here who wanted to screen did not need 2 yearly pap testing from 18 until age 70, as the Dutch and Finns have shown 7 pap tests is enough, 5 yearly from 30 to 60. The Finnish program dates back to the 1960s so this is not new evidence, we've knowingly seriously over-screened and over-treated women for many years. (The Dutch had this program too until they moved to 5 HPV tests or HPV self testing a couple of years ago)

      That's the shocking thing...that so few women make an informed decision TO screen and the damage caused by our program was mostly avoidable.

      Nice chatting to you

      Kind regards

      Elizabeth

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