Unnecessary Pap Smears Discussion Forum

This post has been created to provide an additional forum for discussion, and is a continuation of the old Blogcritics’ Unnecessary Pap Smears discussion.  The original Blogcritics Unnecessary Pap Smears discussion had more than 10,000 comments, but the comments were deleted following changes to the Blogcritics’ site.

Fortunately, the comments from Blogcritics have since been recovered and are preserved here: http://unnecessarypapsmears.wordpress.com/2013/07/12/over-10000-lost-comments-on-unnecessary-pap-smears-find-a-home/   This post also provides a ‘part three’ continuation of the ‘part two’ discussion forum that exists on this site: https://forwomenseyesonly.com/2013/09/22/discussion-forum/

Thank you Alex for suggesting the addition of an open forum devoted to discussion on this blog.

1,841 comments

  1. Ada, an interesting article, I’ve read a fair bit about the watch and wait approach that was adopted in NZ by Dr Green.
    Dr Green was very concerned about over-treatment, he could see it was a huge concern with women having conizations and hysterectomies for CIN 3, including many younger women who may have wanted children.

    He was certainly right about over-treatment – I was astounded when I finally found some research showing the lifetime risk of colposcopy (and usually a biopsy) under our program was a huge 77%

    It explained why so many women were being referred with “abnormal” results. I’d like to know the lifetime risk of having abnormal cells removed, that must have been high too because it’s just so common – so many women have had “bad cells off”…

    I note they talk about ignoring informed consent back then, I’m not sure there’s more respect for informed consent these days, I think the profession has been very slow to view cervical screening as elective and one that requires our informed consent.

    I still see Clinics mention on their websites that women on the Pill “need” cervical screening…quite clearly, that’s completely incorrect, the two are unrelated and no one “needs” screening.

    There’s still a lot of resistance here, controlling women and their bodies is still firmly in place here, that’s why self testing is only for women who decline the invasive test, the so-called hard to reach groups, and the self test has to be carried out in the doctor’s rooms or in their toilet.

    It’s also why the Delphi Screener (last I heard) can’t be purchased by Australian women, if you want to self test, you have to self test within the program. I noticed the site was blocked shortly after the new program started, think it had been possible to order the Delphi Screener online for about 4 years – but (from memory) your result was sent to your GP. (so they could still control the woman)

    I do wonder how many women have actually been helped by all this testing, the cancer was always rare here and in natural decline – seems to me an awful lot of grief could have been avoided.

    When we’re considering tests to screen for a rare cancer, it’s important to weigh up the impact it might have on the vast majority who’ll never have an issue with the cancer – that certainly wasn’t done in cervical screening, harm was maximised with far too much testing and early testing.

    Yet most simply say the program is a success story – if you save some women, and the numbers would be low, rare is rare – how can you justify the damage this program caused to so many women, those who would never have had an issue with cc?

    I don’t think you can…it can only be justified if the health and well being of the majority of women is considered unimportant.

  2. I’m 32 years old i live in the US and I have never had a Pap smear or any of those procedures . I received a call from the clinic reminding of an appointment that I never made for a Pap . Since then I haven’t slept ate or maintain focus I’ve been stressing it I ended up in a depression because of that stupid call !!!! Ughhh pls ladies I need your support!!!!

    • First off, Esther, calm down. I’ve worked myself up into a sleepless anxiety-fueled depression over these too. Your body, your choice. No means NO. Cancel that appointment which they made without your knowledge or consent. You have a legal right to refuse any medical procedure, test, or treatment – and that’s much easier to enforce if you don’t go into the clinic, and don’t take your clothes off.

      • Yes I can’t sleep I wake up every hour I’m trying to be my old self but, the call got me really depressed! And not to mention anxiety . Thanks for hearing me out

    • Hi there Esther, I know how you feel, I’ve had pap smears since I was 19, luckily they have always come back normal, my last one was just over 3 years ago and I’ve decided not to have anymore, I’m 47 and have had enough of trotting of to the drs every 3 years, getting myself into such a state of anxiety, and then being anxious for 2 more weeks waiting for the results, I would feel quite liberated at my decision, but because I have health anxiety and have had some bleeding issues for 4 plus years, i worry that I’m doing the wrong thing, I hope I can put it behind me, but it’s now made me phobic about having sex because of a incident of bleeding after sex 7 months ago, unfortunately that’s the last time I had sex with my husband of 30 years poor man as it scared me, also i recently had a 7 week period, anyway sorry for going on to long, if there is anyone who can tell me about there issues and how they dealt with it, also I do not smoke, only ever had one other partner before him, but the drs and media make you feel like cervical cancer is rife, and theres also the conflicting issue, does hpv reactivate as you get older, all these thing just add fuel to my anxiety, I’m convinced i must have cc, as this is what we are being told all the time, i just need help to get over this.

      Thanks ladies

      • The way to get beyond health anxiety is with real information – such as from a reputable medical journal, and actual statistics. In the US, it’s slightly more likely that you will die of CC than die of being hit by lightening!

        A 7 week period, missed or skipped periods, very light or very heavy, is part of normal perimenopause, which I would expect at 47. I dealt with it by just “dealing with it” – always wearing a pad since I could not predict.

        If HPV “reactivated” after years of dormancy, that would fly in the face of the whole field of immunology or virology. Pathogens run their course. Sometimes, their course is a lifetime. If things could go away and reactivate, no one who had mumps, measles, chicken pox, etc would have immunity, nor could vaccines possibly work at all. Yet, at the same time they claim that HPV (uniquely) “reactivates”, they give people Guardasil vaccines. No, you might become re-infected, as immunity tends to fade with time, but does not reactivate.

        The more you look for CC, the more likely you are to find it. There are “incidentalomas”, which are cancer, but so slow-growing they will never bother you (but the treatment sure can!!!), or false positives. Do enough tests, even with low odds, and you’ll have a false positive. If a woman follows the current US guidelines on screening, even with a “low” false positive rate, she’s got a whopping 77% chance of having a “follow on test” over her lifetime – biopsy, LEEP, even hysterectomy – all with inherent risks and pain. Well, that’s better than the 95% it was with the schedule of “annual” from puberty to grave.

  3. Thanks for making me feel a little bit less anxious and less scared about the situation. I just hope I can get through this !!!! And be me again !!!!

    • Make it clear to them that penetrating your vagina is not something open for debate. Your refusal is final, and not open for discussion or debate. If they try to coerce you by refusing you some other medical care because you refuse a pap (an optional screening test!), that could be considered rape by coercion. It’s just as coercive if a doctor refuses to treat your real medical issue if you will not allow him to penetrate your vagina (by instrumentation) as it is if another professional will not provide their professional service if you will not allow them to penetrate your vagina, if an employer makes it a condition of your continued employment and paycheck that (he) will penetrate your vagina, or a firefighter will not extinguish the fire or rescue your children and pets if you do not allow (him) to penetrate your vagina.

      Get them on record. If it’s legal in your jurisdiction, record the conversation.

      • I’m going to do the no call no show and blocked them this is stressful for me . I want to smile again and all this got me sooooo depressed 😭

  4. Thank you
    I will do the no call no show better all of this is to stressful for me to deal with . Thank you for your kind and empowering words . Life in the US is very stressful and difficult. I can’t keep feeling like this !!!!

  5. I was just researching anti-fungal creams, and it brought back unpleasant memories of being absolutely grilled and interogated by a chemist/pharmacist as to WHY I wanted a vaginal anti-fungal cream.

    I used to battle ear infections a lot, and whenever I was prescribed antibiotics I always ended up with vaginal thrush afterwards, which scientifically was to be expected. I absolutely hated going to the chemist to get thrush cream because I was never allowed to just buy the vaginal cream. As soon as I said the words, ‘vaginal thrush cream’ the chemist’s ears would perk up and the grilling would begin –

    ‘How did I know I had thrush?’,

    ‘Have I seen a doctor?’,

    ‘What are the symptoms?’,

    ‘How long have you had the symptoms?’,

    ‘Have I had more than a few thrush inffections that year?’,

    ‘How do I know its not a STD?’,

    Blah, blah, blah blah.

    This always infuriated me no end. It’s a level of surveillance of my vagina (or any womans vagina) which is so unnecessary. Because the stupid creams are kept behind he counter, there was no way to avoid the ‘interview’ to see if I was a stupid, clueless woman who didn’t know what I was talking about.

    I always fought back with my own questions.

    ‘Why does what my vagina is doing matter to you so much?’.

    ‘Why do you presume I’m stupid?’.

    ‘Do you think I’m going to stick it up my nose instead of my vagina?’.

    ‘Do you think I’m going to stick it up someone else’s nose?’

    ‘Why do you think I don’t know what thrush is?’.

    ‘I’m a biologist and know a hell of a lot more about candida albicans than you do, so cut the crap!’.

    ‘Of course I’ll see a doctor if this dioesn’t clear up or I develop more serious symptoms, why do you think women can’t think for themselves and need to be told?’.

    ‘What is it about being female that you think means we’re all empty-headed?’.

    I used to send regular emails to the pharmacists guild here in Australia saying that treating women like stupid little children over thrush is quite offensive and not based on reality. I was always told the same thing – this is a controlled medication, you might have something more serious, we reserve the right to question you, what if you have diabetes, blah, blah, blah. So nice to know that the bad treatement of women coems from the top! Which is just a repeat of being treated like a stupid woman! As if anti-fungal cream is dangerous…. (big clue here – it isn’t!!!!!)

    I did used to try buying it on-line but when I did, I was either called or emailed the same stupid questions. Of course, sometimes I just lied and answered the questions like a good little girl with the ‘expected’ correct answers, using a bored robotic voice. And then say thank you for allowing me to have this precious gift of anti-fungal cream, and I promise to use it as instructed and not kill myself or anyone else, with it!

    Since I had several operations on my ears I haven’t had to deal with getting the cream, but I’ve just had a quick research of comparing vaginal and foot anti-fungal creams, and guess what? They both contain the same amount of active ingredient – Clotrimazole 10g/g. There is no difference between the two. The vaginal one, of course, is more expensive than the foot one. And the vaginal one comes with an applicator.

    So if you, like me, resent being treated like a moron, then just buy the foot anti-fungal cream instead. No questions, no problems. You might need to buy the vaginal one ONCE to get the applicator stick, but after that make sure you clean and dry the plastic applicator (some are paper, some are plastic).

    I think all of this is just an extension of the same old medical treatment of women. Men get respect and asked what they prefer or want. Women get TOLD what we’re having, and not allowed much say in it (especially when it comes to our reproductive parts).

    Anyone else had this done to them when they tried to get the cream?

    • YES! I only get the cream occasionally but the last time I did, it was so embarrassing. I asked for the vaginal cream (like you, kept behind the counter and brought out by the male pharmacist) and was asked if I would be applying it to the external skin, internally or both! What business of his is that!!??

      Thanks for the info about the foot cream similarities, that will make it much easier in future!

      • You’e welcome Bec! It’s so ridiculous. And asking if you were using internally or externally?! Holy cow. I have no words. Should have said, ‘Oh, did I say vagina? Silly me, I meant my big toe!’. LOL

    • Oz this is shocking, it’s also juse another big con by big pharma to rake in the profits, I remember over here I think it was Nurofen being told off for marketing Nurofen specially formulated to attack period or headache pain faster when the active ingredient was still ibuprofen, which can be bought even more cheaply as the generic ibuprofen! Obviously the “targetted” Nurofen was wayyy more expensive. ….

  6. I’ve never had a pap either, and I’m in my forties. After researching all the facts (which doctors never tell you) and finding out the payments which doctors get for performing a pap, I’ve always declined them. It’s a battle sometimes, and I get the disapproving looks/speech, but I will not jump on the pap merry-go-round for anyone. If I have symptoms, I might have one, but otherwise, no way. The risk of getting cervical cancer is so damn small, I’m very happy to forgo a pap test.

    Same for mammograms. I will not get routine ones and I wil certainly refuse to participate in the screening programs. And I look forward to the day I turn 50 and start getting the automatic appointments and demanding letters, because I’ll give them hell!! My body, my choices.

    I believe that as long as you research the pros and cons, know what the symptoms are, know what the diagnostic tests are, and make careful choices about how you will procede, this is the best thing to do with paps or mammos. Don’t let yourself get thrown under a truck with painful testing or demands for this-or-that. Be informed and tread carefully, and stop seeing a doctor that demands your compliance!

    • Oz, no one ever gave me a hard time over mammos, at 51 I got my first “invitation” , pre booked summons actually, with a request to please cancel if I wasn’t going, which I did purely so someone who actually wanted it could go, opted straight out, never a word even though at first I was still hassled about smears after opting out.
      The topic came up incidentally when I sought help for menopausal sweats and flushes and was emphatic, no HRT. The doc asked why no HRT and I said: not convicts safe and anyway I de idea no cancer screening and there’s a link btween HRT and breast cancer? She asked from curiosity why I didn’t have any screening and I explained my reasons for both smears and mammos. She couldn’t actually disagree with anything I said and I left with clonidine. There’s less pressure here for mammos and the one off bowel scope, and after covid I think they’ll strugg9to get smear uptake back to even before it was pre lockdown!

    • Thank you OZ I thought I was alone yes I’ve never had a Pap reading a lot of testimony of all the lady’s that have never gotten a Pap is making me feel better about myself !! And less anxious

  7. I have to say, when I had very serious bleeding problems with heavy periods, no doctor was ever concerned with that. I was refused help over and over again. Its amazing what ‘things’ the doctors treat as serious and what they don’t, because theire doesn’t seem to be a lot of logic in it, and they’re still guided by out-of-date ways of treating women.

    My heavy periods started in my teens and I would regularly miss school because I could not leave the classroom often enough to change a tampon and pad every 15 minutes (teachers would get abusive and derisive and say I was ducking out of work and should go to the toilet before or after class! And these were female teachers). I was abusively told by doctors that I was whinging whenever I asked for help with the heavy bleeding. I was even denied blood tests to see if I was low on iron when I was becoming absolutely exhausted! And that is ridiculous.

    I had a nervous breakdown and became suicidal when I couldn’t finish my university degree and graduate because my periods were so heavy, I physically could not sit through exams (which were 3 hours long) if I had my periods. A super tampon and super pad would last 15 minutes – if I was lucky. Sometimes as soon as I changed myself and stood up, the blood would flow straight out and I had to start over again.

    I did end up getting my degree, by appealing and obtaining special permission to have exams re-sceduled whenever I had my period. It was a battle though. The admin staff always gave me disapproving looks. I felt like a bad student for causing a fuss. I should never have had to go through that but I have no doubt some women at uni still have problems like I had and they struggle to get help.

    Becase of what I went through, I now treat doctors and the medical profession as more than a bit useless, and I carefully pick and chose what I will or will not do.

      • Hi Kat, yes, I was seeing a lovely psychiatrist and she put her foot down, saying this is ridiculous that you can’t get help. She found a gyno who would perform a MEA (microwave endometrial ablation). Then it was fixed! I now have very light periods and one mini tampon will last for 6 hours.

        The whole point was that no one would help me because ‘help’ consisted of making me infertile (which the MEA does, up to a point). I’m childfree and have never wanted kids, and we all know what doctors are like about THAT when women say they don’t want kids. Women are still not allowed to decide that they won’t have kids. Your reproductive rights are not yours.

        The gyno that did my MEA told me I must not mention her name to anyone as she could get in trouble for doing it on a woman in her thirties with no kids.

        It’s the same problem that women have when they want their tubes tied. Oh, we can’t do that, you must first have X number of kids, and X of each gender, and you must be over X age and your husband must give you permission! It’s just insane.

  8. Oz just glad you got it sorted it’s disgusting what we have to put up with! I’ve always said if men had periods they’d be given free period products on the NHS or at the very least wouldn’t pay tax on them as they’re classed as a “luxury “ item apparently!!

    • Hello Esther. I have been reading some of your comments with regards to screening and the hassle you seem to be getting from your healthcare provider.

      I couldn’t agree with BethKZ that the most potent weapon in your arsenal may be reputable medical journals.

      Thinking of ways to dodge medical professionals’ inquisitions has been a feature of all my surgery visits during my reproductive lifetime (a sad reality, really).

      What has helped me the most is refusing to engage with them in a firm, but polite manner.

      Whenever the point has been raised, I have found ways to shut down the conversation as soon as I have been able to do so.

      Telling them, “I have made an informed decision not to screen” has usually worked.

      Medical professionals – particularly nurses – often whittle on and on. They sometimes don’t take no for an answer and will try to keep the conversation going as long as possible in order to get the answer that they want.

      They often lull women into a false sense of security, who may divulge sensitive non-health related information during their consultations.
      For example, they might discuss their current relationship, how long they have been sexually active and how many sexual partners they’ve had. Many women are naive to the fact that this information is often recorded. They are not friends and they are not to be trusted.

      Be mindful that some of them may try to discredit any sources that you provide them with.

      When I was once asked why I didn’t screen, I told them that I had researched the evidence and had made an informed decision not to screen. She accepted it. Another doc tried pushing further but backed down when I politely repeated the fact that I had made my decision.

      I give them no excuses, no reasons and no justifications because they don’t need to know.

      If you do choose to confront the situation, perhaps a short telephone call or brief letter would be sufficient.

      It isn’t easy to confront this of course. I avoided docs throughout my late teens and twenties but felt confident enough to say, “no” when I reached 30.

      I thought what is the worst that can happen? What can they realistically do if I refuse screening?

      I readied myself for the foot-stamping and the toy-throwing that might ensue, but being firm worked for me. I use the approach during my work settings too if I’m dealing with representatives from partner organisations who try to bend the rules or blame me for things that do not go their way. I find it largely works and it can feel empowering once I’ve gotten over the daunting feeling of having to challenge them.

      Back to screening, if they were to get tetchy, threatening or abusive, you could always politely remind them you have a right to decline under the law, and if they persist, you will consider legal options.

      Deal with the situation in the way that best works and feels most comfortable for you. I just thought I’d share my experiences and what has worked best for me.

      Good luck and keep us updated as to how the situation is going for you x

      • EDIT: I meant to say that I couldn’t agree *more* with BethKZ’s comment in my 2nd para. So sorry 😲

      • You read the actual science and medical journals for yourself – to help you decide that screening (or any other medical test or procedure) is not worthwhile – or you might decide that something IS something you want and would help you.

        When you’re in the room talking to them, you will lose if you start debating the research and science. They have spent years reading it, and looking at it, and siding with that which will make them the most money or sides with the medical status-quo. They don’t want to rock the boat.

        When you’re actually IN the office, you give them a firm “NO”. Penetration of your vagina is not open for debate.

      • Thank you Apocalyptic Queen
        I’m glad I’m not the only one who hasn’t had a Pap smear I’m 32yrs old and I’m petrified of just thinking about it I needed up gettin ptsd because of that stupid call !!!! I’ve been searching for ppl like me one lady said that Pap smear is slavery shit and that she refuse screening !!! But still they shouldn’t be scaring women to getting this scary painful test !!!!!

      • Ah, the “Pap smear is slavery”. There’s something to it. Look at the background of how the pelvic exam was developed, and how the speculum was developed, and who the test subjects were. They were literal black slaves in the southern US. The speculum exam was used to effectively torture (poor) sex workers in the UK before 1900… many of them chose to forgo this “exam” and just spend the time in Old Bailey. If you look at how the speculum was developed, it’s got its origins in The Pear – a torture device used in the Middle Ages when looking for witches/heretics – They expanded the orifice (mouth, vagina, or anus) painfully, and caused tears.

        The similarities to slavery are striking in that they feel entitled to your body – as if THEY own your body. I’ve mentioned that back to the 16th century, one fundamental right of a free person is bodily integrity and bodily autonomy. The medical field has a strange idea of what constitutes consent – different than in any other situation.

  9. Reverting back to the issue of Covid-19. As you are probably all aware, there seems to be a lot of people challenging what they perceive to be, as “excessive” control by the authorities in an attempt to reduce incidence and transmission of late.

    I do not personally agree with all their arguments especially given the prevalence of Covid, put the point being put forward is a familiar one (to us).

    “Why should medical and governmental bodies have the right to store sensive information about us, and monitor our data, when the risk of dying of Covid is in the region of 0.6%”?

    They say, that as it is a disease which primarily affects the older population and those with co-morbidities, then the level of monitoring is excessive.
    80% are asymptomatic or have mild symptoms of the disease.

    Given the fact that around 40k deaths have already been partially or fully attributed to this illness since the pandemic started here in the UK alone, including around 2,000 people under the age of 65 who apparently had no underlying health conditions, then it is difficult to fathom how virtually no one has asked similar questions of cervical screening.

    When you consider the lifetime risk of contracting cervical cancer is 0.58%, the risks posed by further treatment, that only 5% of CIN I and no more than around 31.3% if CIN III ever progresses into cancer within a 20-23 year timeframe, the invasive nature of the test, lack of informed consent, that NHS Trusts stores data on our health profiles including sexual health etc, and that they need our addresses, contact numbers etc to mount a successful screening programme, this programme is excessive by anyone’s standards.

    While I don’t necessarily agree about the arguments concerning Covid, I do wonder how a programme that is far more excessive and intrusive than track and trace, seems to have escaped scrutiny, and even wonder whether people might see screening in a new light or whether they will predictably, plod on as usual, and fail to recognise that the screening programmes and the surveillance that comes with it, are far more intrusive than track and trace.

  10. Hi ladies I’m still trying to overcome this anxiety I sign up to the website women against stirrups !!!! I just want to be me again and forget about the Pap test or cc but it’s hard !!!! You guys words id wisdom help a lot pls keep giving words of wisdom thank you

  11. Beth
    Thank you for the information
    I’m still a little anxious trying not to think about it !!!! I hope I overcome this depression…. pls give me words of wisdom!!!! I’m tired of thinking about paps and crap like that !!!!

      • Esther sometimes there are lapses here where no one seems to be posting- that is partially due to the fact that many of us live in different time zones in the US as well as the UK amd Australia. Just know that we are all here for you, supporting you. You’re stronger than you think and by sharing your experience with us you have also helped others with similar thoughts know they are not alone.

  12. Awww thank Judy
    I really need every ones support and words of encouraging I never thought this was going to affect me sooo much i hate the feeling of not being able to control my mind! The system is corrupted and is harsh !!!

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